Both of my parents died
in their mid-forties. So when I developed a tremor in my left hand in the summer
of 1993, at the age of 46, I began to get worried. I was working on my first book when a tremor began in my left arm.
I thought I was developing carpal tunnel syndrome or something worse. I tried to hide my shaking using the usual tricks
of carrying items in my left hand or putting my hand in my pocket to hide the tremor.
Finally after nine months, I went to my family doctor and after a couple of visits, he suggested that I had Parkinson’s
Disease (PD). We began treatment with Amantadine for about three months and decided
that it was time to switch to something else as I was exhibiting side effects of edema from the Amantadine. My family doctor gave me a choice of one of the dopamine agonists or levadopa. After much research of the
benefits of both courses of treatment, I decided to go with carbidopa/levadopa
and Eldypryl (selegiline HCL). After a couple of years we decided that I should
see a neurologist who specialized in PD. After seeing the neurologist , we then
decided that Mirapex and Comtan should be added to the cocktail. By September
2003, I was taking 20 pills a day for my PD. I was also suffering from severe dyskinesia and frequent on/off periods.
That’s when I entered the Parkinson Center of Oregon Deep Brain Stimulation (DBS) study.
Life
Before DBS
My day normally started
around 6 a.m. when I would take my first dose of medications. I would then sit in my recliner and play games on my Palm Pilot for 30 to 45 minutes
waiting for my medications to take effect. Once they started working, I would
eat breakfast, shower, and dress before the dosage wore off. I then took my medications
every 3 to 3 1/2 hours throughout the rest of the day. Off periods were characterized
by very slow movements and stiffness. When my medications were working I couldn’t
control my movements, especially on the left side. I would tell my students sitting in the front row to watch out for my left hand as it would often swing wildly
as I moved around the classroom. When I was off, I often used the students to
be my hands at the computer or whiteboard. I would start every course with a
pop quiz. I would ask, ” What do Pope John Paul, Janet Reno, Johnny
Cash, Mohamed Ali, Billy Graham, and Michael J. Fox and I all have in common?”
Before my retirement I used a portable voice amplification system called ChatterVox to amplify my voice so those in
the back could hear as my voice got quieter.
The University was very supportive during the eight years I continued teaching after my diagnosis. They bought voice dictation software and eventually reduced my teaching load. I brought a recliner into my office so I had a place to relax while waiting for my medications to take
effect. I usually taught night classes which were four hours long, one night
per week. It was usually impossible to stay on for an entire class period. I would take my last dose of the day during the class break and hope I turned on before
the class was over.
However, I did not let
Parkinson’s stop me from doing what I wanted to do. I served on the Board of Directors for a national professional organization for two years and was chairman
of the academic advisory committee for an additional two years. I was able
to go to Kazakhstan four years in a row (1997-2000) on short term missions trips where I taught seminars on the basics
of a market economy and stewardship. Minimal allowances were made for me such
as ensuring I was well rested. I was able to be a testimony to the Kazaks as
well as my teammates to God’s grace and sufficiency on each of the trips.
I also enjoy woodworking. Along with my elder daughter, we started woodworking about four years ago. We began by building a set of dining room chairs and a 700 sq. ft. deck.
We then branched out into wooden puzzles and toys along with other pieces of furniture.
Deep
Brain Stimulation
Deep Brain Stimulation involves
inserting an electrode into a specific area of the brain which is hooked to a controller, similar in size to a pacemaker,
that generates signals which jam the signals that PD generates which, in turn, cause the tremors and dyskenesia. The process
involves two surgeries. The first, which takes four to five hours is where the
electrodes are inserted into the brain while the patient is awake. The controller
is inserted and attached in the second surgery.
On March 31, 2004, I had my
Deep Brain Stimulation surgery. They checked me in and then took me down to have
the stereotactic head frame installed by screwing it into my skull. At that point
they took me MRI so they could locate where the frame sat relative to my brain. I
then had to wait another three hours before being taken to surgery.
After the surgery was finished,
I felt so good after the first night I was ready to go home the next day. However,
they had to take a follow-up MRI to make sure everything was in place. So they
kept me until Wednesday. I was back the next Monday for the controller implant
which was uneventful. When I woke up my neurologist was there and they turned
on my controller. It was amazing to watch my left leg stop tremoring as they
turned up the voltage and the right side of my face contort when they turned the signal up to much. About two weeks later I went in for a baseline setting of the controller.
Life
After DBS
After DBS surgery I am
able to enjoy doing things I wouldn’t have dreamed of doing before. Gone
are the off periods and the wild dyskinesia. I parked my walker and haven’t
used it in two years. I played golf several times in the past two years for the
first time in ten years. I also have taken up bowling after 30 years. While attending a PRO support group, I heard about a new group that was starting up at Sunset Lanes that
would involve bowling. My wife and I had not bowled regularly in 30 years, but
after attending one meeting we were recruited to join a league.
I now
bowl in three leagues per week and generally can be found there the other five days practicing.
PD
Philosophy
Parkinson’s involves
many small changes over time. You learn to adapt to your changing abilities but
foremost you cannot allow Parkinson’s to rule your life. It is much to
easy to stop doing things because the PD makes it difficult. You need to make
allowances for the problems it causes but you still try and do the things you want to do.
Some people do not understand why I would rather be dyskinetic than bradykinetic. I would rather be able to move with control problems than not be able to move at all. Sure, it would get tiring after 3-4 hours
of dyskinesia but 3-4 hours of not being able to move was extremely frustrating.
My faith in God is one of the things that has enabled me to cope with PD. He
provides strength to face the challenges that each new day brings. I am thankful
for each day and the opportunities they bring me.
Dr.
Alan Raedels, C.P.M.
Professor
Emeritus
Portland State University
April
2006
